My Chronic Life

When I got diagnosed with cervical dystonia in 2010, I quickly became disabled with horrible chronic pain in my neck and upper back. I spent close to a year on the couch much of the time. Even simple tasks like making breakfast became overwhelming. After awhile I began practicing chair yoga, moved on to neck and yoga postures, and as I improved, on to whole body yoga. Am I cured of dystonia? No. It’s one day at a time but yoga has greatly reduce the need for pain management medications.

I don’t have to tell you how fast-paced and easily distracted our world is. When not in the car, people are sitting behind their desks all day, whether at home or in the office. They’re hunched over their phones. Many come home and crash in front of the computer. It seems easier to sustain an unhealthy lifestyle with processed food and inadequate movement than to put the effort into healthier lifestyle habits.

When we don’t put healthy habits first, we can become more susceptible to chronic pain and chronic illness. I’m convinced this is part of what happened to me. When the day finally came that I was really struggling, I started looking for answers and became willing to change.

The Benefits of Yoga For Chronic Pain

Like me, many people are looking for natural health alternatives for chronic pain. Traditional pain medications and muscle relaxers, while necessary for some, have side effects and run the risk of addiction. Yoga is an ancient practice combining meditation and exercise which have a deep and long lasting effect on the mind and body. Yoga regulates breathing and increases metabolism, aids in weight loss, relieves stress and reduces depression and can also help in pain relief and management.

How to Get Started With Yoga for Chronic Pain Management

In yoga you can find a huge variety of practices and teaching styles. If you don’t care for mysticism, be assured that most of what is taught in a typical gym setting is going to be more health oriented. Or you can always look around on YouTube to get started with an at home practice. I highly recommend Yoga With Adriene. She’s fun, relaxed and not overwhelming. If you’re checking out a yoga studio, look at their social media accounts to get a feel for where they’re coming from. No matter which you choose, it’s really important to get proper cuing and guidance as you move through asanas. For awhile I used printouts from various sources but now I realize that I really missed out on the full mind body experience and tended to rush through it.

There are various ways to get started with yoga, including classes at a yoga studio or a yoga DVD. It is important to get some kind of guidance when doing the poses because posture, alignment and simply being able to relax and follow the directions of the yoga teacher make a big difference in the outcome. I recommend Healthy Moving and Yoga Download.

Simple Asanas To Help Manage Pain and Promote Relaxation

You must know your own body and its limitations. If you have back problems, you will want to check what’s safe for your condition with your doctor or do some online research about your condition.

The best thing about yoga is that it can be practiced anywhere and anytime. And remember, it doesn’t even have to be a full practice. Think about taking short movement breaks. You can do some of them in bed, your home office or even in your cramped workspace if you know the right exercises.When getting started, just begin with a simple intention, meditation or spiritual prose. Find something to focus on and begin to practice some simple breath work. This will ease your mind and body and prepare it for the exercises ahead. Remember to be slow and steady with your movements.

Child’s Pose – This is my all time favorite and can be done anywhere around the house. I love to use a big bolster, turn down the lights and just relax in that position.

Cat/Cow Stretch – This can be done in bed or on your yoga mat. It’s simple, relaxing and easy to remember.

Cobbler’s Pose – This pose can be done by most people and is a great way to counteract the sitting that we do all day.

Laying Twist – This is so easy to do in bed, even if you’re too tired to do much else and helps to release lower back tension.

After all of this (if you can) try some relaxing poses like the pelvic tilts, legs up the wall pose or happy baby pose. When combined with simple breathing techniques, you’ll be amazed at your overall feelings of wellness. I can’t promise how fast overall pain reduction might happen for you, but know that if you stick with it and continue to make small strides forward you will see improvements.

Don’t forget savasana (corpose pose)…it’s the most important part of the practice. It lets all the good movements and postures settle in to your mind and body.

This blog post should not be construed as medical advice. I’m not a doctor or a yoga teacher, just a yoga enthusiast who has suffered with the debilitating neurological condition dystonia since 2010. Yoga for pain management has worked for me not as a cure, but as a tool to help manage the complexities of my condition.

This blog uses affiliate links. They do not affect the cost of the product for you, but I receive a small commission for recommending them. I only recommend products that I feel comfortable with and believe would benefit my readers. Thanks for your support!

Well, December completely blew up on me. I’ve been sick off and on since Thanksgiving and have been trying to keep up with the usual holiday craziness and various medical appointments that HAD to be this month.

I’ve learned to let go of most holiday expectations and accept what I can and cannot do. It’s been said that expectations are premeditated resentments and that has certainly been a problem for me in the past.

I’m continuing to practice positive self care as much as I can. For me this looks like:

*Minimizing sugar intake

*Yoga every day I can

*Plenty of rest

*Saying no when I have to

Looking ahead to 2017 I’m trying to take some time to see what I really should be focusing on and be more intentional with my time in 2017. I probably won’t be writing much until after the holidays and am trying to minimize random social media scrolling. I’m really finding that it sucks the life and creativity out of me.

Thank you all who visit my blog for your comments and support, and I’ll see you soon!

What a crazy week! On top of election madness I got my quarterly Xeomin (Botox) shots on Wednesday so I’m feeling pretty frazzled.

Here’s a few posts about chronic illness (or chronic living in general) that I wanted to share with my readers.

Be blessed, and have a restful weekend…maybe detach from social media and go outside if you can or create something!

Do you struggle with finding enough time for everything you want to do? This can be really hard for people with chronic illness or chronic pain because our bodies give out before our minds do. When Survival Becomes Living In Excess will show you how to find contentment.

Have you ever wondered about CBD oil (the non-THC form is available in all 50 states). Check out this review from The Girl With Five Lads

If you need some suggestions for gift ideas for yourself, here’s a few great ideas from Chronic Mom

Life can get downright overwhelming at times. How do you handle times of ongoing stress? Like Faydra Koenig mentions in her new blog post Living While in Personal Crisis it’s all too easy to succumb to the temptation of binge eating in yoga pants while numbing your mind on Netflix reruns.

And you know what…that’s okay. For a little while.

But when it starts to drag out for weeks or months, it’s time for you to take action. Don’t know where to start? Living While in Personal Crisis gives you actionable steps to take so that you can start to feel alive again. She’s done the thinking for you.

Crisis happens. You think I raised my hand and volunteered to hook myself to the scandal that hit my family? Ummmm, no. Emphatic NO! Did it happen anyway, yes. Sitting in my yoga pants, eating chips and dip (man I love chips and dip) was my silent middle-finger to my situation. Weathering my storm zapped my energy and for a moment I found sustenance in Reduced Fat Ruffles and this sour-cream-Ranch-dip-thing I like to make. (Don’t judge me, you jerk) After a while, the thought of mixing up the dip and going to the store for more chips felt like a misuse of my time. I started to want more. I wanted to stop going out to get chips and I wanted to go out and get a life. No one was coming over to moderate my chip intake and tell me that there was more to life. I had to find it for myself.

I’m filing this one away on Pinterest for future reference. In our family, there’s always something around the corner…and I like chips too.

This election season is like none other I can remember in my lifetime (though truthfully I wasn’t always paying attention!) It seems like everybody is at each other’s throats and there is so much volatility that it’s tempting to just stay off social media. But on the other hand, the concerns being raised are complex and worthy of thoughtful engagement and discussion.

How do you find a healthy balance?

You may have some very worthwhile talking points that you want to share. If it’s heavy on your heart, then you should do so. There are very important issues being discussed that affect women, minority groups, people of faith, first responders and the disability community right now (totally random order here.)

The old days when we got our news from the morning paper or evening news are over. Now we have a 24/7 news cycle. Blogging and social media give those with an inclination to write a natural outlet to express their thoughts. This is both good and bad. There are a lot of eloquent people out there worth following, while others are just spreading division.

There is a lot of anger and hurt out there on a number of issues. People who have been stuffing their thoughts and feelings for years are finding healing in coming out of the shadows and voicing what happened to them. Social media has given a voice to the formerly voiceless. This is good and helps to bring awareness to important issues particularly discrimination which has impacted many of us.

However, before you share that great article or post a political opinion on social media, give it some serious reflection and consider the following:

*Have you researched the information? Is it accurate?
*Can you effectively handle the disagreement and ugliness that your post might trigger, no matter how heartfelt your intentions were when you wrote it?
*Are you ready to spend a few days babysitting your Facebook thread so that it doesn’t get out of hand?
*How well do you handle online stress? (For me, it sets off my dystonia-induced head tremors so for the most part I try to avoid it unless I think it’s that important. And some things are.)
*Are you ready to potentially be unfriended by people you’ve been FB friends for years?
*Have you considered the ethnic and cultural diversity of your online friends who probably have had very different life experiences from you and are being triggered by the sensationalistic news headlines?

How to Survive on Social Media This Election Season

Many people wonder if they should just turn it all off until after Election Day. But social media has become an integral way that many of us communicate with each other. And for those of us who are homebound, bloggers or work virtually, getting online is essential. It really is quite possible to do this and preserve your sanity.

*Turn off all notifications.
*Consider removing the Facebook app from your phone.
*Set times to check Facebook and Twitter. Then stick with them.
*When on Facebook, learn to walk away. Scroll on by without reacting. Don’t read comment threads. You don’t have to respond to every crazy opinion that’s out there. If certain topics are triggering you, unfollow the people who are posting them.
*Don’t go online when you’re tired. Or if you’ve taken a muscle relaxer or any medications. (Ask me how I know.)
*If you feel you must reply to an opinion, think carefully about it. Consider the source. Remember that most people will probably skim threads and really not read through that thoughtful response you just spent 10 minutes or more crafting and then type something thoughtless.
*Filter your feed. I’ve found this to be a little harder on mobile but I’ve set notifications for bloggers and pages that I enjoy, read those first and try to resist random scrolling as much as possible. On my desktop, I can also just choose “Pages” feed.
*Spend more time on Instagram or Pinterest. They’re happier places.
*Stop scrolling period. Be intentional online and just check in with your close friends and favorite pages. And as much as you can, just turn everything off and go outside.

You know, all of us should make more of an effort to engage with people in person instead of only online. Online communication can just magnify our differences. Try to meet and start conversations with people from different backgrounds who live in different neighborhoods and don’t vote or look like you. We should break bread and engage in meaningful conversation with each other and share our stories. We’ll probably find that we have a lot more in common with each other than we thought.

I’ve also come to believe that sometimes we’re better off not knowing everyone’s political views. Online communication can put a strain or even destroy real life relationships. Those long, drawn out threads rarely change minds and often cause hard feelings. Think carefully before you post or reply.

As a busy mom it’s way too easy for me fall into the habit of continually multitasking. This means I’m often thinking ahead to the next thing before I finished the thing in front of me and am not fully engaged in the moment.

If I don’t step back to regroup and focus, I am just going through the motions of living and am more prone to mistakes. Some signs that showed recently me that I’m operating on autopilot include grabbing the wrong pair of glasses on my way out of the house, getting the wrong things at the store or even online shopping and losing things around the house.

Some researchers say that the average person spends over half their time on autopilot. The problem with living on autopilot is that since you aren’t actively engaged in the moment so you’re missing out on your life.

Here are four warning signs that signal you’re probably living on autopilot:

Constantly Checking Your Phone

Do you check your phone every time you have a spare moment? Check emails and Facebook at red lights? Or you scroll through your social media feeds in the waiting room? Worse, are you using your phone when you’re driving? When you’re living this way, you may feel like you’re super connected, but the reality is that you’re disconnected from the world around you.

Grumpy Attitude

Everyone complains to some degree when things don’t go as planned. But if you notice that you’re frequently complaining about the same things over and over, then you might be living on autopilot.

Look for the good things in your day. Even if it’s been an awful day, there’s always something to be thankful for. But if you’re constantly distracted with your phone you are probably missing out on the sacred moments in your day that are right under your nose.

Eating Mindlessly

You’re constantly grazing and find yourself in the kitchen looking for food when you’re not even hungry. You wolf your food down but don’t remember what your food tasted like. Maybe you’re surprised to find you’ve eaten more food than you should have. This type of disconnect between your body and mind can lead you to overeat and to not fully enjoy your meals.

Letting Life Just Happen to You

Have you ever developed a mission statement or even just a few simple goals? If not, you’re letting yourself drift along in life so you wind up spending the majority of your time reacting to what life throws at you, instead of fully living in it. Now, if you’re in a crisis, then this can be a good thing. It means you’re focused on survival and that you don’t have time to tackle anything else.

But if you’re not in the middle of a crisis, then you need to disengage the autopilot. Stop accepting what’s happening as if you have no control over your life. If you want to start a business, get healthy or get married, write those goals down and start taking action. While you can’t lose 100 pounds overnight, you can focus on exercising for 20 minutes just for today.

Living on autopilot is a learned habit and disengaging from ingrained behavior patterns does take time and effort. You can learn how to live with intention by taking your day one moment at a time and it will get easier for you..

10 Simple Ways to Live With Intention

Eat the frog. Plan out your day and get the tough stuff done first thing.

Slow down and as much as possible, do one thing at a time.

Stop comparing.

Limit social media intake. Have a set time and a plan. Prune your email and social media feeds. Hide or unfollow toxic people.

Living mindfully is easy enough when things are going your way. But the challenge comes when you’ve encountered a difficult problem with a family member or at work. Maybe your spouse said or did something insensitive that really hurt you. Or your kids are acting up. Whatever the situation is, you’re being bombarded with lots of emotions all at once.

The natural reaction is to want to blow up and just let it all out. While this solution feel better to you at first, this approach can cause long term damage to your relationships. Learn how to deal with life’s stresses mindfully and see how much better you feel.

Begin With Awareness

Often, we want our emotions to be heard, so begin by noticing and acknowledging how you feel. Say something simple to yourself like, “I’m angry that _______ did _______ Take a few deep breaths. Pray a simple prayer while you’re doing this. Notice any other emotions you feel bubbling to the surface like anxiety, depression, anger, sadness, or jealousy.

Analyze Your Emotions

Where are these emotions coming from? Are they linked to something that happened recently? It’s important to pause and ask yourself if your emotions are in reasonable proportion to what happened. For instance, we might react to a minor incident because we’re not acknowledging a problem in a different area. If one of your kids spills something on the kitchen table you might be tempted to lose it with them. But if you take a minute (or more) to pause and regroup, you might realize that you’re angry about some other unresolved problem and took those emotions out on your child.

Think the Problem Through

When your frustration or problem has to do with someone else, think about it carefully before you decide to confront them. Give it a lot of time. Have you been projecting your emotions on to them? Are you willing to step in their shoes for just a moment to look at this situation from their perspective? Most importantly, be ready and willing to listen.

Consider the Alternatives

Sometimes, a frustration or problem comes along that can be handled easily. Ask yourself if you can change the situation. For example, getting angry about difficult relatives or insurance companies isn’t productive and doesn’t solve anything. Ask yourself what your real choices are and what might be the best way to handle the situation.

Seek Guidance

If you have a coach or mentor you can contact, you should do that. Ask them for guidance on how to tackle this problem effectively. Often another person can provide a fresh perspective that can help you look at the situation in a new way. You could also reach out to a small group or community that you’re part of. Your small group can give you the benefit of several different perspectives you’ll probably find out you’re not the only one dealing with these problems.

Don’t beat yourself up if you don’t handle every frustration or problem mindfully. Instead, simply acknowledge that you could have dealt with the situation differently and move on from there. Mindful living isn’t about getting it right every time or being perfect. It’s about living in this moment.

In 2014 I published a blog post (just republished) explaining my support of #YesOn2. Since then I’ve come to realize that I’m a distinct minority in the conservative Christian community for my medical marijuana advocacy. A voter guide has been making the rounds of our community and has been sent to me a number of times.

In this blog post, I’d like to address some of the common concerns that people have shared with me recently.

The voter guide states:

A YES VOTE legalizes the smoking of marijuana in all 67 Florida counties for “any condition”, which could include fatigue, depression, body aches, nausea, pain, and headaches. Any person at least 21 years of age could be considered a “caregiver” and sell the drug without a prescription. There are no age restrictions or parental consent requirements, so minor children would be eligible to buy and smoke marijuana without their parents’ permission.

Please take some time to read the Constitutional Amendment Petition Form for yourself. Compare the following statements from the Amendment with the allegations made in the voter’s guide. (This post has not been updated for 2016 yet)

“Qualifying patient” means a person who has been diagnosed to have a debilitating medical condition, who has a physician certification and a valid qualifying patient identification card.

Nothing in this section shall affect laws relating to non-medical use, possession, production or sale of marijuana.

Nothing in this section authorizes the use of medical marijuana by anyone other than a qualifying patient.

Nothing in this section shall require any accommodation of any on-site medical use of marijuana in any place of education or employment, or of smoking medical marijuana in any public place.

It also states that regulations will be implemented including the issuance of patient identification cards to people with doctor certifications. How does this leave the possibility of minor children becoming eligible to buy and smoke marijuana without their parent’s consent or knowledge?

Charlotte’s Web has been legalized in Florida. Why does another law have to be passed to legalize medical marijuana?

There are many forms of medical marijuana. For example, Charlotte’s web is a sativa strain which has less tetrahydrocannabinol (THC) and more cannabidiol (CBD) than typical varieties of marijuana. The family of Charlotte Figi states that she has experienced fewer seizures after taking her first dose of medical marijuana at age five.

In contrast, the indica strain is what other dystonia patients have told me that has helped them the most. The benefits of indica include body pain relief, muscle relaxation and reduction of spasms, headaches, anxiety and stress. These are symptoms that most dystonia patients experience on a daily basis.

This strain is not available to patients in Florida. My former physician told me that he would not prescribe cannabis at this time because he feared professional liability the way the law is currently written.

Chronic illness patients and families across the state are pleading that their loved ones needs all options for medical marijuana. Speaking as a dystonia patient, I’m fearful of the long term side effects of the meds that I try to take sparingly but must at times to relieve the horrible muscle pain and spasm that I experience.

What about children having access to medibles?

If a responsible person has prescription drugs, guns or alcohol in their house, they take utmost care to keep it out of the hands of their children. Sometimes it still happens and the law is there to cover those circumstances. Do we take those freedoms from everyone because of the abuse of some? (I’ve been hiding my chocolate from my family for years. But I digress.)

What does the Bible say?

The Bible doesn’t say anything about marijuana. It does say:

“Do not get drunk on wine, which leads to debauchery. Instead, be filled with the Spirit.” (Ephesians 5:18) As a person in recovery and a Christian, I have no desire to present a stoner image. If I ever have the right to legally acquire medical marijuana in Florida, I would use it with utmost discretion.

“Then God said, “I give you every seed-bearing plant on the face of the whole earth and every tree that has fruit with seed in it. They will be yours for food. And to all the beasts of the earth and all the birds in the sky and all the creatures that move along the ground—everything that has the breath of life in it—I give every green plant for food.” And it was so.” (Genesis 1:29-30)

Ultimately we each must prayerfully make our own decision about our vote. But make sure it’s a truly educated one and not from fear and propaganda.

The Onset

My cervical dystonia story began in 2010. The symptoms came on fast and furious in August that year, just after I had decided to try to bring son with Down Syndrome home to homeschool him. My symptoms began with a distressing pain in the neck (really!) followed by involuntary twisting that I couldn’t control. Shortly after, the head tremors started and I started to look like I had Parkinson’s disease. I lost some of my equilibrium and the panic started to rise as I had no idea what was going on. Muscle spasms and tightness gripped my neck and upper back. Suddenly I was mostly crippled and on my back for much of the day. I could barely cook for my family and had to homeschool from my bed.

The Diagnosis

I initially went to an orthopedic doctor who announced I was in spasm. (Because I needed somebody else to tell me that.) X-rays were normal. Then he told me the words I’ll always remember. “I’m afraid it’s cervical dystonia. You need to see a neurologist. Go home and look it up.”

The Treatment

The first neurologist I saw was a disaster. He seemed to think it might be in my head and tried to prescribe antidepressants. I took the prescription but didn’t fill it. Upon doing some Internet research I saw that the number one protocol was Botox injections to calm down the muscle activity. I promptly found another neurologist. Meanwhile, I was completely crippled. I had no choice but to place Nicolas back in school as his safety was an issue. We applied for emergency respite services from the state. I had to go through Walmart on a scooter and had to stop driving for about six months.

The second neurologist was more professional but never wanted to use an EMG to help find the best place to inject and so the results were never very good. I was constantly cocked to the right. I was becoming horribly self conscious about my appearance and didn’t feel like leaving the house. I began seeing a new doctor about a year ago, a physical medicine doctor who specializes in dystonia. He uses the EMG and I’ve had far better results with him.

Finding Relief

I began to research alternative treatments and started doing exercises from Spasmodic Torticollis Clinic at home. Then I came across a book called “Yoga for Movement Disorders, Rebuilding Strength, Balance, and Flexibility for Parkinson’s Disease and Dystonia”. As time passed, I started to see some improvement. I started using a DVD called “Viniyoga Therapy for the Upper Back, Neck & Shoulders”. Encouraged by my diminishing pain and better posture, I kept going with it. One day in my local Barnes and Noble I noticed a book called “Holy Yoga” by Brooke Boon. I loved the Christian perspective and began doing yoga to praise and worship music in the morning.

My Life Now

Getting a Dystonia diagnosis is the most devastating thing to happen to me as a special needs mom. I often feel like I’m not the same parent to my younger kids as I was to the older as my activities are more restricted. However, I have regained a lot of function and mobility. Here are a few ways that I manage this disorder.

Faith: Where would I be without my faith in God? It’s my light in a dark place, my hope and my strength. Even in the depths of my pain and anxiety, He’s always there.

Physical Activity: When I started looking at people who were living positive lives with dystonia I noticed they all had one thing in common…they kept physically active. For me, that’s a combination of PT exercises, yoga, aromatherapy, water exercises, and some walking as I’m able. I’ve been living with the cervical dystonia diagnosis since 2010.

Stress Management: I’ve had to learn to manage stress better as too much of it makes my symptoms worse. Here’s an article I wrote for 5 Minutes for Moms about how I manage stress.

Nutrition: Unfortunately this has been hit or miss for me but I do feel better when I follow an anti-inflammatory diet (Paleo) and stay away from sugar and wheat.

Xeomin and muscle relaxers. There isn’t any getting around this. I hate to do it but it’s a necessary evil at times. Every three months I get injected with 400 units of Xeomin directly into my neck and shoulder muscles. It helps calm down the muscle activity and keeps the tremors away most of the time. I use muscle relaxers very sparingly, only when I need them.

I have a Pinterest board called Surviving Cervical Dystonia which has helpful tips and inspiration when I’m feeling down. I’m grateful I’ve been able to manage this with minimal meds and have regained a great deal of functionality (initially I lost my ability to drive and even sit at the computer.) Due to my cervical dystonia diagnosis I was able to get social services for my son which helps immensely.

Life with Dystonia is one day at a time. Weather, hormonal changes and sickness can make things worse. I have learned to roll with it and rely on God…who said that “His grace is sufficient for me, and His power is perfected in my weakness.”

If you’re newly diagnosed, know that you’re not alone. Find a good neurologist for treatment. Be your own advocate. Research and network online. Here’s some helpful resources you’ll want to check out:

Following are a few of my personal recommendations, with the caveat that we are all affected differently and in different parts of the body. What works for me may not necessarily work for someone else.

Diagnosis Dystonia – I wish this had been available when I got diagnosed, but was so happy to see it released. Tom Seaman covers every aspect of living with dystonia including coming to terms with the diagnosis and how to live with it. He’s an incredible power of example to many of us in the dystonia community.

Yoga for Movement Disorders – This was the first yoga that I was able to do after being stuck on the couch for months. Chair based yoga and very gentle.

The above is not to be construed as medical advice. I’m just sharing what has worked for me. A couple of the links are Amazon affiliate links. It does not affect your cost, but I get a small financial benefit from recommending them. As you know, a cervical dystonia diagnosis means disability for many of us. You can certainly purchase the product without going through my link.